Addison's Disease, Hypothyroidism, Pituitary Tumour

[Sabena]

This is my first post and sorry it's a bit of a long read. I'm really glad I found this amazing community and thank you everybody for the wealth of information you provide in this community. I'm taking T3 (80 mcg) for the hypothyroidism; hydrocortisone (30mg) for the Addison's and waiting to have a non-productive pituitary tumour surgically removed. It's been quite a journey to have this correct diagnosis. I have had to fight with many doctors to come this far! Suffered premature ovarian failure only to get the pituitary tumour diagnosis years later when Addison's and hypothyroidism had set in! This community and the STTM community has helped immensely in supporting me through this journey. Although I'm not yet there, the support has helped me improve enormously.

Due to the rarity of Primary Adrenal Failure(Addison's), it is extremely difficult to find information on a combination of illnesses like mine. With a faulty thyroid, I gained over 70 lbs even though I was diagnosed with Addison's (which causes extreme weight loss usually)...doctors were confused and also thought I was just too lazy to exercise! AWith undiagnosed Addison's, I could hardly get out of bed most days, let alone exercise!! These doctors...SMH.

After extensive research on the internet, I ended up suggesting treatment options to my current doctor, who is, thankfully, very receptive and I feel much better than I have felt in YEARS! I am now on a journey to lose weight and have finally started to shed the weight after years of piling it on. It's early days yet but I have shed 15 lbs in two months and am on my way out of being pre diabetic!!

I just wanted to encourage others as I have been encouraged and supported through your posts by telling you to keep searching and to listen to your body first and foremost. Don't allow your doctor to tell you he/she knows your body better than you because of a blood test!

[Barrister]

I was diagnosed with Addison’s secondary at the end of November ( personally I believe it’s primary because of having Hashimotos, Lymphocytic Colitis and Psoriatic arthritis, all autoimmune but am still awaiting adrenal antibodies results). My Endo believes it’s secondary because I have Psoriatic arthritis and had quite a few steroid injections over the last couple of years. I lost a lot of weight before diagnosis, but starting to put it back on ( hoping that’s just because of Christmas over eating though!) My GP was very surprised at my diagnosis and said he had only ever seen two or three patients with it.

Clemmie

[Sabena in reply to Barrister]

Hi Clemmie

Addison's is quite rare still or maybe they just don't know how to diagnose it When they finally get it right, often we have suffered a whole lot more than necessary. Hope you get a clear enough indication to make it possible for you to live comfortably. Another major indication to look out for with Addison's is skin bronzing and darkening of the armpits, elbows, knees, etc.

In the meantime, just eat and enjoy your Christmas holidays and eat as much as you want...don't stress out for any reason, it worsens the condition. Good Luck Clemmie

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I also have Secondary Adrenal Insufficiency due to an ACTH pituitary tumour causing me to have Cushing's Disease. The tumour was removed in Sept 15 but hasn't woken up yet - doesn't look as though it's going to so am 25mgs HC. I dose according to the circadian cycle so take my HC every 4 hours n reducing doses - it works well for me & I haven't put on weight however I haven't lost the 2 stone I gained with Cushings! Sabena - I was "lucky" in that my tumoour was found by chance but at that stage was not producing excessive ACTH.

Barrister - Primary is when the adrenals don't work to produce cortisol, secondary is when the pituitary is compromised or has been caused by prolonged use of steroids. However they are both treated the same although secondary don't usually need fludrocortisone as our adrenals produce it.